Yeats

"Too long a sacrifice
Can make a stone of the heart."
William Butler Yeats, "Easter, 1916"

God preserve me from such a fate, though I fear I am irrevocably on that path: The inappropriate laughter that wells up when I should feel pity, compassion and respect. The dry eyes when I should be wailing. The normal heart rate when adrenaline should be coursing through my veins. The stolid efficiency that everyone relies upon. The iciness that is beginning to creep into my psyche. The dogged perseverance and unwillingness to let go of the reins. But worst of all, the impatience and contempt that are leaking into my rebel heart; the fallout of a deeply entrenched war.

To surrender, to be defeated, might bring an abrupt end to the war. To stand firm, the challenges will worsen, the psychic casualties will mount. But I refuse to succumb. Falling to my knees is not an option. Coldness must be embraced as a means of survival.

"And what if excess of love
Bewildered them till they died?"






*Fritz Baumann, "Kriegsverletzter (War Veteran)" 1916

Just Another Friday (Parkinson's Crisis, Part 2)

She leaned her forehead against his, "Michael, Michael, I have to call an ambulance. I don't know what else to do."

She had found him on the floor between the couch and the coffee table, stretched out on his belly. She wasn't alarmed. He spends a lot of time down there these days. He usually seemed to be absorbed in the intricate patterns on some of the carpets. Sometimes he just fell asleep. When she wrapped up her telephone conversation with her friend she went into the living room to check on him before preparing supper. She hadn't seen him go to the floor but only minutes before she could see his head doing its characteristic dyskinesic bobbing and swaying while he watched TV, and, clearly, from his position on the floor he hadn't fallen, merely slid down for a nap. Or so it seemed.

She called his name; his eyes were open but not moving. He didn't respond. Repeatedly she called to him. No response, not even an attempt to make eye contact. When she tried to help him up into a sitting position, he was a dead weight. He couldn't move and yet he was breathing normally.

What the hell??

She continued to call his name, ask him questions, urge him to move. Nothing. She shoved the couch and coffee table back so she could manoeuvre him somehow. Rolling him onto his back worked; then she was able to get his knees up and haul him into a semi-sitting position, allowing her to pivot him on his bottom so that his back was to the couch but too far away to be propped against it. With careful wedging of pillows to prevent him falling back to the floor, she rushed around behind the couch to shove it back into position where she could lean him safely.

Now that he was up, she had to assess his cognitive functioning. "Michael, what's my name? Are you in any pain? Can you look at me? Can you squeeze my hand?" His eyes were blank, unmoving. His mouth was flapping in an odd fish-like manner, open and shut, open and shut. No sound could he utter. No eye contact. No hand squeezing. She ran into his room to grab the blood pressure monitor. Normal.

Was this a Parkinson's crisis? She'd seen near catatonia before but rarely this severe. Usually it was provoked by a trauma like a hospital visit or a dental procedure, never just out of the blue like this.

She grabbed the portable phone to call her neighbour, a nurse. No answer. She tried the doctor's office knowing it was late and probably closed. No luck. Then her son called, just checking in as he often does on his way home from work in a distant city. Relief flooded through her as she told him of the predicament but she hung up nearly immediately to call the after-hours number for home-care patients. He calmly promised to call back in a few minutes.

The patient, unruffled nurse at the other end of the phone, hearing her tale, stated very clearly that she had to call an ambulance. "There's nothing anyone can do for your husband at home. He must go. Will you call 911 as soon as you hang up?"

Yes, she promised, dread gripping her heart. Here we go. She took a deep breath preparing herself for the catastrophe that was about to unfold. In his fragile state this could well be the end. A terrified final few hours in that hated hospital. Heavy narcotics to quell the mania. Uniformed guards to protect the staff from her crazed husband. Straitjackets. Agony.

One last effort to bring him round before she made that call from which there was no return, her head resting against his, "Michael, Michael, I have to call an ambulance. I don't know what else to do. I love you. Please come back now. Don't let it end this way. Please."

His leg moved. His eyes flickered.

"Michael, look at me." His eyes moved tentatively to focus on her face.

"Michael, what's my name?" He whispered her name.

"Can you grip my hand?" A slight squeeze.

"Are you in any pain?" An almost imperceptible shake of the head.

She sat back on her heels and heaved a heavy sigh. She knew the spell might not have passed fully and she had to be very vigilant. She helped him up onto the couch, got him settled comfortably, then curled up next to him, head on his shoulder. With every passing second he became more alert, his eyes darting around the room, his quirky Parkinson's facial contortions returning, his tongue doing that weird shooting out of his mouth like a lizard, all of it a joyously welcome sight. 

When he was fully recovered a few minutes later, she asked him if he could explain what those frightening fifteen minutes (or was it longer?) had been about. He could offer no explanation, of course, but in his strange, garbled way, he said he could hear her through it all, that he had decided not to respond to her entreaties, and then he went on some ramble that made no sense at all. 

It was music to her ears.

"A Prayer for those at Sea," Frederick Daniel Hardy, 1879

Further Down the Rabbit Hole

"No, I didn't," was the hot denial from a man who cannot remember five minutes ago. I had to assume then that the television remote control had made its way into a sink-full of water at the hands of an intruder or the dogs. As it was a quiet day with no visitors, I highly doubted the former; as my dogs are intelligent canines but do lack the skills to plan such mischief, I ruled them out too. No, it was another of Michael's odd little escapades that I'm sure made perfect sense to him in the moment.

I've learned there is no point trying to find reason in his bouts of madness, nor is there anything gained in reprimanding him or suggesting he not do that again. He will simply forget. Unlike a small child who will eventually remember and learn appropriate behaviour, Michael's mind no longer has the capacity to learn, though he sometimes seems to possess that childlike curiosity that simply cannot resist finding out what might happen if you plunk the remote control into a basin of water.

Lately Michael's dementia has escalated to the point that he can no longer hide it in front of others most of the time. Until recently he could, as do many who are stricken with senility, rise to the challenge of putting on a fairly normal face in front of visitors, reserving the real Michael for me alone. I used to feel that some folks doubted my reports of his extreme behaviour simply because they never saw it, especially those who only saw him occasionally. As recently as last summer I would feel an odd mixture of extreme frustration and delight when I would take him up to the soccer field to socialize with his old buddies. He would be the old Michael, back-slapping and running to retrieve the soccer ball, then slump the moment I got him back into the car; overcome with exhaustion, he would shut down completely. Some of these same men have recently helped me out by spending a couple of hours with Michael to allow me some time off. The look of alarm on their faces upon my return as they reported his bizarre behaviour was strangely satisfying. Ah, at last you are seeing what I see every day.

But his behaviour around me has worsened too, leaving me nervous to take my eyes off him for more than a short while. A few days ago, as he rolled up the living room carpet, he explained incoherently something about the Civil War, soldiers and how he had been killed. Another time, again down on the floor with a carpet, he was apparently looking for a flashlight. Then there was the moment, with wallet in hand, he announced he needed to find his way home. He knew neither me nor who his children are. Indeed, like poor Alice confronting the Caterpillar, he couldn't even identify himself.

A recent conversation with the doctor about what course to take if no infection is found in a urine sample, taken after I discovered clumps of blood, brought us to a new understanding, at least for the doctor. When he asked me if the normal protocol of scans, cystoscopies, and whatever else might be needed to get to the bottom of a possible urinary problem could be followed, I told him I could never see Michael tolerating anything beyond mild procedures that could be performed at home where even collecting a urine sample is now very difficult. I asserted that my concern is to ensure not only his physical wellbeing but also, more importantly, his equanimity. We've had this conversation before even though I have a document stating minimal intervention in the event of a catastrophic episode. The doctor needs to confirm and reconfirm that we are on a purely palliative course now.

It is February, and cold and snowy outside. It is an isolating time, trapped indoors with insanity, but at least he is sleeping through many more hours of the day now, calm and quiet in bed or on the couch to balance out the more manic, delusional times. Television viewing, however, is now slightly more challenging as I wait to see if a dry remote control will still work.

*John Tenniel's illustration from Lewis Carroll's "Alice's Adventures in Wonderland", 1865.

Breakfast with the Mad Hatter

Michael was once an epicure, not only enjoying a fine bottle of wine and a sumptuous meal, but also no slouch in the kitchen. When I met him he even had a subscription to a magazine dedicated to fine cuisine. My own cooking style leans toward the staples: casseroles, whole foods, child-friendly meals. His cookbook of choice: "The Playboy Gourmet" (with no reflection on his sexual proclivities). Mine: "Whole Foods for the Whole Family" published by the La Leche League, and "Diet For a Small Planet", the hippie cooking bible of the '70's. Worlds apart, as you can see, but it made for great variety in our early days of eating together, each of us appreciating the other's style...usually.

I'm not sure if this is common in all cases of dementia but with Michael I have seen an enormous change in his tastes. A big part of my job is to ensure he has a nutritious diet that pays special attention to his numerous issues: lots of fibre for the ever-so-sluggish bowels, and careful amounts of fats and salt for his heart condition. There is also a need to pump the fluids, sometimes a challenge with a man whose beverage of choice used to be coke or ginger beer, never water.

Mealtime for Michael is haphazard. Sometimes he is well enough to eat, sometimes not. There are periods of time, during a prolonged episode of mania and psychosis, when he will not eat, at least not very much. Severe bouts of constipation can also interfere with his appetite. This is when I must focus on getting calories alone into him without paying as much attention to quality. At these times he seems to revert to what I call kid food: cans of Chef Boyardee Ravioli, peanut butter sandwiches, small yogurt cups, porridge, hot dogs, pepperoni sticks, pizza, tuna casserole.  If I had the energy to create the kind of gourmet meal he used to enjoy, maybe he'd actually eat it. We'll never know. Instead, because of my own recent dietary restrictions, I've been producing a lot of hearty soups and low fat delicacies, none of which are at all appealing to him. And vegetables? The closest he gets to that these days comes in a jar or bottle to go on top of his hot dog. Colour, yes. Nutrition, not so much.

Then there are the days when he forgets how to feed himself. Not frequent - yet - but difficult when it happens. I must step in and spoon-feed him, or, at the very least, cut up his food and demonstrate how to feed himself.

But today there was a new wrinkle. On serving him his scrambled eggs and raisin toast, he pushed himself away from the table. When I asked what he needed, he announced, "Ketchup." Michael has never had ketchup on his scrambled eggs, I quickly reminded him, but he was adamant. Okay, ketchup it is. When he got it into his hands he started to squirt it over everything, including the sweet toast. I don't know why I bothered but I let out a little shriek to stop him (as if it really matters that he wants ketchup on his toast). He looked at me defiantly and articulated as clearly as the Mad Hatter, "But I've always eaten my toast with ketchup."

Hard to argue with that logic. For the record: He ate all his breakfast and even added more ketchup to his toast before he was finished.

* John Tenniel's illustration from Lewis Carroll's, "Alice's Adventures in Wonderland", 1865.

The Holiday is Over

It's three weeks this Thursday since my surgery and I'll be declaring the holiday over when I see my surgeon tomorrow. I won't go so far as to say it's been fun but it has been a change. And what is it they say about the connection between change and rest?That adage certainly applies in this case. At the very least, it is a holiday that makes me happy to be back.

I recovered remarkably quickly despite a rocky few days of unusual and worrying, post-operative, abdominal pain. I figured out the cause (too much Ibuprofen) after fearing it was some horrible complication of surgery. But the silver lining of that cloud was that I needed more back-up at home for longer than I had anticipated, so I had to call upon my children after my caregiver and then my fantastic brother had competently covered the first few days. My daughter, who is expecting our first grandchild in May and whom I hadn't expected to see at all during this pregnancy, came home for five days. She relieved our son who had done a two-day-long shift. Neither of these children had we seen over Christmas so their presence felt like a belated gift.

In the first few days, I had people completely taking over Michael's care while I languished (and writhed in pain and vomited). By the time our daughter arrived I was well on the way to recovery, requiring only an afternoon nap to get through the day, so I had plenty of time to spend with her. I read books, slept when I needed to, enjoyed not having to cook, chatted over steaming mugs of tea. I wasn't allowed to engage in my usual energetic, strength-building workouts so I indulged in guilt-free laziness. I have even started to regain some of that weight I lost during and between my visits to the Hull Spa and Weight-Loss Clinic, also known as the Hull Hospital. Even after we were back to a fairly normal routine, I refused to do housework beyond cooking and laundry, the two most necessary tasks. The snow even held off until I was strong enough to tackle a shovel this past weekend. The mounds of dog hair rolling like tumbleweed through the house are tauntingly calling out to be vacuumed up but I have ignored them until now. This week I will show no mercy and will enjoy that task, a sure sign that I'm back from my holiday.

Michael held up well during the ten days of my convalescence and house guests. The night after the last one had left and we were finally alone in the house together, he had his characteristic manic melt-down. But it was short-lived and tolerable since my strength had nearly fully returned. Besides, I had declared that I was still "on vacation" so the afternoons were spent sprawled out on the couch with both of us snoozing with one eye on the television. My sister-in-law had loaned me three seasons of the award-winning television series "Sons of Anarchy". I have a fascination for aberrant, criminal behaviour and I found myself quickly addicted, justifying many hours of guilty, pleasurable indulgence as a necessary part of my convalescence. I'm not sure staying up all alone until one a.m., stuffing my face with previously forbidden potato chips, in front of hours of murder and mayhem, would be described as the ideal convalescence but I was on holiday so I didn't care - even when Michael had a psychotic episode that same night, allowing maybe only three hours of sleep. I knew I could just cancel life the next day if I had to. I was overcome by a strange insouciance. 

As is his way, his condition is now belatedly worsening as if somehow he recognizes that I'm fully recovered and now able to deal with his collapse. Will it be another long descent into his special Hell this time? I don't know. Signs are pointing to it being an especially harsh journey but he has pulled through long, bad ones before. It's okay, though. I am no longer worried about my own health and I'm ready to take it on. We made it through that difficult hurdle. We'll make it through whatever else is in store for us.

I'm back.


*Zuleika, John Singer Sargent, 1906

A Clozaril Christmas and New Year Predictions

2013 has arrived. It is more than three years that I have been providing intensive care to my husband, mostly alone. It is astonishing to me that we are still at this. Michael's resilience seems to be unshakeable. 

I have long given up anticipating (hoping for?) dire things whenever his condition changes. My hospitalization two months ago did affect him hugely, creating all the problems I predicted, namely increased psychosis and confusion. His overall physical health, however, does not ever seem to be harmed, only his mind. He is oblivious to the challenges these psychiatric changes bring, mercifully. It is up to me to shoulder these problems.

Since my last post, Michael's psychosis increased so badly that an emergency visit to the neurologist was in order just two weeks before Christmas. His anxiety was keeping him awake and active in the night and was untouched by the usual anti-anxiety medications. Hallucinations were becoming a daily experience and delusional behaviour meant there were days when I could barely leave his side for fear he would hurt himself, endanger us or suddenly decide to rush outside into the harsh winter conditions. A curious aspect of this disease is that when confusion is extreme he can no longer understand the workings of a toilet, resulting in many accidents on the bathroom floor if I am not paying very close attention. The problem for me with this mysterious confusion is that it is in no way consistent; he will have many days when he can be left alone to manage in the bathroom but then there will be without warning a moment when he suddenly forgets. I become complacent during the more lucid moments not paying the close attention that is needed for the confused times. This is unfortunate because I have been speaking to him harshly and with frustration when I have a large mess to clean up. 

Michael's neurologist prescribed an increase of Clozaril, the anti-psychotic medication Michael has been using for over three years. He has been on a relatively low dose so the gradual doubling of this powerful and dangerous drug seemed the most logical approach to this escalating problem. The doctor informed me that the anti-anxiety medications with which I was having so little success this time could actually increase the psychosis. He also told me another curious aspect of psychosis after I had reported the more severe falls Michael was experiencing with little or no pain: Apparently deep psychosis can heighten a person's pain threshold, protecting him from the pain that would otherwise flatten the rest of us. Being constantly in a state of fight or flight, though posing long-term dangers to the heart, at least has some benefits.

The effects of the gradual drug increase were noticed immediately. Though the ability of this drug to clear the mind of psychosis can take a few weeks, at least the soporific effects were felt immediately, giving me a reprieve from what had become a fairly constant vigil. I was hopeful that he might settle down by Christmastime. There were also brief moments of complete lucidity with the old Michael shining through, startling me with his intelligence and humour. The drug seemed to be working.

Christmas was to be a relatively quiet affair for us with only two children home. We were planning our usual Christmas meal at home with extended family, this time on Christmas Eve for a change with many of the invitees returning on Christmas afternoon for leftovers and games. It was fun, just the tonic I needed to help me through the loneliness of this job. But Michael fared very poorly despite the increased Clozaril.

For the week that there were extra people in the house, his activity level once again increased and his hallucinations were obvious to everyone as he swatted his slipper at unseen vermin and crawled on the floor picking up invisible objects. During a spirited card game of Spoons where every player must grab a spoon (or pencil in our version) at the appropriate time, Michael, who was not participating in the game itself but was seated with us at the table, suddenly grabbed the pencil that a young guest had also reached out to claim. Our poor guest looked surprised especially since Michael had no intention of relinquishing the pencil. For some reason I found this so funny that it took me several minutes before I could gather myself together to resume the game. On another occasion, during a relatively quiet visit with his elderly mother, Michael was scooping chip dip with his hands and placing his orange peel into people's tea. His poor mother's alarm was visible; I don't think she has ever seen his dementia so obvious. Our daughters, on the other hand, calmly guided Daddy's hands away from the dip and quietly picked the orange peel out of their teacups, all without fanfare. 

We are a day away from my laparoscopic surgery to remove my gallbladder if my mild cold does not derail these plans. If all goes as it should, I will be gone only about ten hours, if that, and will return home in the evening, our caregiver here overnight to care for both of us.  I am not worried for myself but I am fairly certain of one thing: this is not likely to be tolerated calmly by Michael no matter how well he manages in the short-term while I am convalescing. All past experience points to major disruption.

I can safely predict that 2013 will bring us more of the same: more psychosis, more confusion, more anxiety, more chaos in Michael's addled brain, more isolation. Of my own health and resilience I am less certain. Since it will likely be another year of no change in our situation I must think of more strategies of endurance that do not adversely affect what little stability we might achieve with Michael's mental health. 

My New Year's resolution is simply to get by.

*Icon Labirinth (sic) of the Soul (Russia).

Nocturnal Wanderings: Kinesia Paradoxa

While I dream about my baby abandoned in the closet of a hotel that also happens to have a serious infestation of bedbugs, my husband clangs for my attention. It is 4 a.m. and he is anxious about a screaming baby he can hear. The next night I think that the cause of my interrupted sleep is simply another menopausal meltdown since I hear only faint rustlings from Michael through the monitor. Then a light goes on downstairs. I am instantly alert as I realize there is nobody else in the house. Just Michael, me and two sleeping dogs. 

My heart races.

Life, during the past several weeks since my illness and return from hospital, has been relatively calm considering how turbulent it could have been in the wake of that emergency. But the deep waters of my husband's subconscious are not still; they are obviously roiling despite his lethargy and withdrawal into sleep most days. Recently he is often beset with that strange paradox of Parkinson's disease: when anxiety overwhelms, he becomes extremely mobile and competent even at this advanced stage of the disease. 

There has been nearly daily anxiety over a trip he is convinced we must make or a meeting he must attend. Most days he collects all his toiletries in the bathroom and carries them to his room to pack. Twice I found his closet emptied out onto the floor while he sat overwhelmed by the task of preparing to travel somewhere. Vestiges of all those global business trips he used to make as a high level engineer for National Defence? Or is he fretting about my return to hospital on January 3 for the long-awaited gallbladder surgery, determined to go with me this time?

There have been increased visits to the basement to "fix" something, usually during his sometimes manic evening hours. I must follow him on these excursions because of the danger he can put himself into as he tinkers with sharp objects, not to mention the electrical panel that seems to draw his attention and concern. For some mysterious reason he must always approach all things electrical wielding a sharp metal object.

The temperature has dropped outside but that hasn't killed his drive to leave the house occasionally, all without warning and often without proper attire. He is still remarkably quick, adept and quiet when he is single-minded and determined.  I have been lulled into complacency the past year or so since these episodes had nearly stopped; I am having to sharpen my wits again.

I am truly awed by this man's continued physical prowess despite the ravages of this disease. He moves far less now and most days that movement is interrupted by louder, more violent falls. I, so inured to the thousands of falls he has taken over the years, find myself cringing now at their severity. Many people give me a questioning look when I report these falls, wondering why I don't try to prevent them and keep him immobile, protected. That would require forcible confinement, I'm afraid, and I would become his jailer. Initiating movement is still one of the few freedoms left to this man, and he remains miraculously uninjured apart from the growth of a few strange fibrous bulbs on his knees. I will reassess matters if and when he truly hurts himself. In the meantime I think I have done all I can to make his movement through the house as easy and unconstrained as possible with strategically placed grab bars, wide open spaces and familiarity.

But this morning's feat was stupendous. I was lying in bed, just awake, awash in hormonal sweat and not yet paying full attention to the rustling I could hear in Michael's room. At 6 am he is normally suffering from bradykinesia - the extreme slowness of movement associated with the "off" medication times - if not near-paralysis, his last dose of Parkinson's medication eleven hours earlier. The noises I was hearing surely were nothing more than the waking movements of a stiff body.

When the lights went on downstairs I was out of bed at lightning speed calling his name. I was stunned to find a robust and alert husband preparing to climb the stairs in search of me. Not only had he made it successfully out of his imprisoning hospital bed, he had climbed over the baby gate I use to keep the dogs confined at night in the hallway outside his bedroom. On top of that he was fully dressed!  Pants, socks, one slipper and a warm fleece jacket over his shirt. Even his sodden diaper had been carefully removed and neatly stuffed into the garbage pail by his bed. I was dumbfounded, awed, and mostly grateful that his instinct was to find me and not flee outside on this cold night.

My first comment was to express my admiration at his overwhelming accomplishment. Then I asked him if anything was wrong. "Anna's sick," he said, clearly troubled. 

"No, I don't think so," my calm reply. Our eldest child, recently married and now pregnant (yes, we are to be grandparents in 2013!) has been very healthy so far, but I promised myself to contact her at a more reasonable hour since Michael had just managed to plant a seed of anxiety in my own brain. I asked him what he wanted to do. I couldn't deny him the pleasure of staying up if he wanted to after that remarkable accomplishment.  But he indicated he wanted to go back to bed. I had to steer him in that direction since he had forgotten where his room was. He was starting to crumple now that I had been roused and he had handed over the problem to me.

I too returned to the warmth of my bed but was unable to relax, listening intently for the reassuring sound of the heavy breathing of sleep to transmit through the monitor. 

I write this now seated opposite him at the breakfast table. He is unable to concentrate on his oatmeal, spooning it over himself or into his tea more frequently than reaching his mouth. He is hallucinating, making strange noises and pulling contorted facial expressions, far worse than usual. The newspaper lies mangled around him, his glasses have fallen to the floor. He is glassy-eyed and clearly disconnected. He will most probably sleep through the rest of the morning, his countenance a dramatic shift from the agile, intelligent man I met on the stairs in the early hours.

I am bracing myself for the next chapter of my own minor illness and treatment. So inextricably linked are we that I know this next stage will be very difficult for him despite all the careful planning I am able to do in advance this time. It fills me with an anguish that I must hide from him but he will no doubt absorb in his uncanny way.

* Ernst Ludwig Kirchner, "Self-portrait as a Sick Man", 1918.